About Rosa Monckton
The five charities with which I have an active involvement are: Acorn Children's Hospice, Downside Up, The Down Syndrome Educational Trust, KIDS and the Bulgarian Abandoned Children's Trust.
I have close personal tieswith these charities. KIDS enhances the lives of disabled children and their families, by providing them with playgrounds, play schemes, family support, education and home learning. KIDS helped me enormously when my daughter Domenica was born. I received the home learning service, and it transformed my life. The early days are very difficult when you have a child with a disability, and the professional help and compassionate advice that I was given still resonate 12 years later. I was chairman of KIDS for five years, and am now President.
The Down Syndrome Educational Trust is based in Portsmouth. It advances understanding of Down Syndrome through research, and provides information, training and services to promote the development of children with Down Syndrome. It was founded by Sue Buckley, who adopted a girl with Down Syndrome over 30 years ago.
I have received invaluable advice from them on Domenica's education, through primary school and now in secondary school. One thing that is hard to accept once you become the parent of a child with a disability, is that every step of the way is such a fight to get what is right for your child. Organisations such as this are a real lifeline for parents.
Downside Up improves the quality of life of Russian children who have Down Syndrome. 70% of children born with Down Syndrome in Moscow go into orphanages. And of that 70% over 10% will die before they are 3 – from neglect. Downside Up provides an early intervention and integration centre in Moscow. They also help, advise, inform, train and educate parents, while working closely with state officials and medical professionals throughout Russia. There is huge work still to be done.
The Acorns Children's Hospice care for life limited children and their families in the heart of England. They have 3 hospices, and the work they do is extraordinary. The dedication and compassion of the staff, and the determination and vision of the management team, contribute to the atmosphere of peace, acceptance and hope that moves me each time I visit. None of us know how we would cope in this situation, or how we would survive with a child who required 24 hour care. Acorns provide the haven, the respite and the professional care that these families so desperately need.
The Bulgarian Abandoned Children's Trust has been set up to help the disabled and abandoned children in Bulgaria who are incarcerated in institutions in utterly dreadful conditions. These children never see sunlight, have no stimulation whatsoever, and gradually go mad through absolute neglect, and are often starved to death. Each time I visit one of these institutions I am wracked with guilt about how little we are able to do to help them. We have raised the issue in the European Parliament, and are now working with the new Government in Bulgaria to try and close one of the baby insitutions, which houses 0-3 year olds. The only solution is to de-instiutionalise, to put in place community based services, and to support families in keeping their children at home. Our aim is to close the largest baby institution in Pleven, where there are over 200 babies. Babies who have given up crying because nobody goes to them, babies who won't learn to speak because nobody talks to them, babies who grow into the shape of their cots because they are never lifted out. The inhumanity is staggering, incomprehensible and heartbreaking.
Please help me to support these charities. Click on the links (at the top of this article) and visit the websites, and see how you are able to help.
Thank you.